مراقبت از زندگی مستقل: جغرافیای مراقبت برای بزرگسالان جوان با معلولیت ذهنی

This paper engages with the emerging disciplinary clash between ‘care’ and ‘independence’ within disability studies by examining the geography of home care for young adults with intellectual disabilities. The care system as a whole is viewed as central to disablist structures within disability studies (see Thomas, C. (2007). Sociologies of disability and illness: Contested ideas in disability studies and medical sociology. Hampshire: Palgrave Macmillan.). However, despite the theorisation of dependency as being in antipathy to the goals of the disability movement, caregiving at home still continues to dominate community care. The paper attempts to address how family carers are ‘caught-in-the-middle’ between their ‘duty’ to care and at the same time, perpetuating dependency; the reality being that parents have to deal with issues of being overprotective and confronting various social assumptions about disability. It examines the narratives from 25 family caregivers in Ireland who provide personal assistance to young adults with intellectual disabilities.

The informal care sector – made up mostly of family caregivers – has for a long time been the largest source of care for adults with intellectual disabilities (ID) (referred to as ‘learning disability’ in social policy documents and in popular discourse in the UK), even during the ‘institutional era’, albeit in the shadow of the asylum (Metzel, 2005 and Thomas, 2007). In any case, the experience of separation and isolation has continued since the asylums closed and people with ID moved into nearby communities (Dear & Wolch, 1987). People with ID have since faced new entanglements of inclusion/exclusion in the community between ‘special schools’, ‘special’ transport, sheltered and group housing on one hand, and mainstream schools, accommodation and types of employment on the other (Hall, 2005). The definition of an ID is the possession of the following features: intellectual functioning is significantly below average; there are difficulties with everyday life skills; and the condition is present from early childhood. It is marked by lack of understanding and communication (NAMHI, 2004). While definitions of ID may provide some insight into the impairment itself, it is important that these definitions do not overly label the person and that generalised assumptions are not made. People with ID are a group regarded as being particularly vulnerable to dependency creation on one hand (Swain, French, & Cameron, 2003) yet can be highly independent on the other; depending on the level and type of advocacy provided (Lemon & Lemon, 2003).